Signs you need your meds increased

[Endless]

Well, my seizures aren't under control with 200mg of Lamictal. That alone says that the dosage needs to be increased. I also feel kind of "pre-seizury", at a really low level on most days. It feels like a feeling of doom, plus this weird feeling in my body sort of like electricity or vibration. It's the same as my regular auras but much less intense. On those days I don't go out and just stick around home. And avoid any kind of activity that takes a brain or human interaction because when I feel like that I screw it everything up.

My doc says that "pre-siezure" feeling isn't anything pre-seizure, and it's something else. I disagree with him.

I guess my question is, does anybody else get that feeling, or am I alone? Do you feel differently when either your dose is too low, or you forget a dose?

 

[Birdbomb]

Holy cow! I've been thinking of starting a thread just like this! I have that same "ooo is this gonna be a seizure?" feeling. It's not like the normal fear of unexpected seizures just happening at anytime, it's a more intimate feeling, not quite a sensation. Hard to describe but I know exactly what you're talking about.
[strike out]I don't think it's a sign of needing more medication, but more a sign the current dosage just killed a seizure from happening.[/strike out]
Never mind that last sentence, I have changed my ideas about it. Blood levels are just a bit too low and sz might be attempting a break-thru. My off-kiltered sensations happen when I'm very active, but not when I'm over doing it.

 

[Minkels]

Wow...this is kind of strange since I sometimes feel this way, too. It hasn't ever led to a seizure, but the doctor upped my medicine and I haven't had the strange sensations that you describe...mine were kind of like a "pre aura" I guess, sort of like a mini-simple partial, if that makes any sense. No, you aren't the only one that's experienced this. I haven't forgotten a dose (not yet anyhow) but did have that kind of strange feeling and outright simple partials when I had stomach flu for a few days.

 

[zbird]

You aren't alone. I was having that sensation too about 7 months ago. My symptoms were a tingling scalp, what felt like muscle twitches in my left arm, and then what can best be described as very strong, vivid memories that would come out of nowhere. It was like watching movies of isolated events in my life, usually insignificant things, things that I know really happened.

Just like Minkels, they didn't turn into my typical simple partials. I wasn't sure if I was imagining things (too much research?) or if it was "real". Told my neuro about it and he upped my meds (Keppra from 500 mg bid to 750 mg bid). Haven't had any more episodes since the dosage increase.

 

[Endless]

It's so comforting to hear I'm not alone in this.

If my medication is working, then it's been working all day. This icky feeling has been there most of the night and all day so far. I've stayed home (not gone out with my family on an outing today), both because I feel so c*@^^y and because I have the outside hope if I lay low it might not turn into a larger seizure.

My epi says my auras are low-level simple partials. But he says it can't last all day. Hmmm... Well, if this has lasted all night and all day, does that mean I've been having a seizure that's lasted that long? I really can't wrap my mind around a 24 hr seizure.

People think simple partials are not a big deal, but they are. They make me feel awful for at least a day, maybe more. And as long as I am in the middle of an aura or a seizure I'm useless for almost everything.

I keep asking myself where the balance point is between medication side effects and seizure control. Is there a certain amount of simple partials I'm willing to put up with so that the medication doesn't totally distroy my quality of life? Do you ever think about that?

 

[Meetz1064]

I've had

this feeling as well before. I know that I didn't enjoy it, but it's been a while since I've had it--I do now remember the last time I had it, and it was a super, high-stress situation.

Like BB said, it's sort of an.......intimate feeling. Not an aura, I don't have those, but something different.

 

[Birdbomb]

Have you tried upping your meds just a little when you feel like this? Say a half dose on top of the regular amount. It could be the medication levels are just a bit lower than normal. And yes, simple partials CAN last all day, so can auras. It's a nasty feeling, too. I had a few several years ago.

I really can't wrap my mind around a 24 hr seizure.

When I was 19 my best friend had a non-stop TC seizure that lasted over 7 hours, the damn thing killed her, she was 24.
zbird and Minkels both had their meds upped because of this odd sensation, my neuro keeps trying to up my dilantin but I just can't deal with it any higher than it is right now.


*/stomps off into a corner and grumbles to self

 

[Endless]

It killed her? So sad... I'm so sorry.

I have all-day auras on a regular basis lately. Since they are only SPs, I'm not terribly worried, but I still feel really awful.

I'm not doing well on Lamictal, but I think it's because the dose is so low (200mg). My doctor still hasn't called me back. I think your advice is good. I'm going to increase my dose by 25mg today. I don't think he'll disagree with that. I need to titrate up very slowly, because last time on this drug I got a drug reaction rash. But it wasn't THE rash (SJ).

 

[Birdbomb]

It was a long, long time ago. Treatments have changed tremendously since then. Going status epilepticus is nothing to take lightly.
Let me know how you're felling later and if that little bit extra helps. In the mean time you might want to put another call into the doctor's office and at least let them know what's going on.

 

[Endless]

I called in again today, and my epi increased the lamictal dose by 25mg in the a.m., so it's a total of 225mg/day. If I'm not feeling better we'll increase again in 2 weeks. He also took me off the gabapentin, since it's not helping me much and I think it's clouding my brain.

In another post I was talking about verifiable/objective evidence of complex partials. I was laying on my couch resting and my service dog started in "rooooooo! rooooo! Yip yip yip!" That's his signal that I'm either about to have a seizure, am in the middle of one, or had one already and I'm just coming out of it and just start hearing him yip. He is only about 60% reliable so who knows whether I had a seizure or not. I've been feeling pre-seizure/aura all day. Still feel totally cruddy. Besides the aura I'm so tired I could cry.

I'm seeing a headache neurologist. I've only had one meeting with him, but I'm hoping he can get to the bottom of all this. He's extremely bright and loves figuring things out. My headaches start at a pretty specific place at the base of my skull and turn into these high-pressure things like my head is about to blow off, then sometimes into a migraine. I have no idea what that means, but hopefully it's a clue. If I'm lucky the reason I'm having headaches might be the reason I'm having seizures. Then maybe medication will be a moot point.

No medication. Wouldn't that be grand?